Taylor wasn't diagnosed until she was 23 years old, at the time she was one of only 44 known cases worldwide. Discovering the PURA community was a huge relief, as it meant finding a new PURA Tribe with whom to share similar issues and experiences. Today, there are around 700 known cases, though likely many more undiagnosed. We are committed to advancing PURA research and exploring potential therapeutic treatments. Rare disease communities are severely underrepresented, and we urge you to join us in creating a brighter future for those affected by PURA Syndrome!!
